AE Alliance Blog

The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.

World Encephalitis Day 2020 Conference

AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day. We feel very fortunate to have …

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First AEA Support Group Meeting in NY

  We are excited to announce the first AEA ‘in-person’ Support Group meeting on December 7 at the Port Washington Library located at 1 Library Drive, Port Washington, NY 11050 from 2 pm – 4:30 pm.    The Support Group Leader, Sydney, has organized for Melissa Jensen, M.A., CCC-SLP of Transitions of Long Island to join us as our guest practitioner to discuss cognitive …

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Gary’s AE journey

The last 2 years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me. This is the result of the …

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Autoimmune Brain Disorders: Beyond the Basics

The American Academy of Child & Adolescent Psychiatry is holding its 66thAnnual Meeting, October 14-19 in Chicago, IL. On Wednesday, October 16, the focus will be on Autoimmune Brain Disorders. Autoimmune brain disorders are a spectrum of illnesses characterized by inflammation of the central nervous system (CNS). Child and adolescent psychiatrists must become familiar with …

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Ask the Panel

AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be …

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Comparing autoantibody-negative and autoantibody-positive Autoimmune Encephalitis patients

Early diagnosis of AE allows for aggressive treatment, which greatly improves recovery outcomes. On the contrary, delayed diagnosis and treatment can lead to permanent brain injury or even loss of life. In literature, no work has been published which compares clinical, radiological and laboratory characteristics of patients with definite autoantibody-positive AE (AE+) and autoantibody-negative AE (AE-). …

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AE Alliance seeks an Executive Director

The Board of Directors of the AE Alliance seeks an Executive Director to lead its global efforts in educating physicians, supporting patients, families, and caregivers, and advocating for a cure to autoimmune encephalitis. THE LEADERSHIP OPPORTUNITY Reporting to the Board of Directors, the Executive Director of AE Alliance strategically leads the organization and its staff …

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Brain on Fire 5K for Hope

The Dewees Family is organizing a 5K run to raise awareness for Autoimmune Encephalitis.  March 2019, just one day after turning 13, Luke Dewees was diagnosed with Autoimmune Encephalitis.  The next month was a terrifying and trying time.  Luke spent more than 3 weeks in the hospital battling this rare and evasive disease.  With the …

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